Hello to everyone. It has been a while since I have posted.

I am so confused. I have been dx with Fibro for many years now, as well as CFS. I have a rheumy that dx'd this. However, I doubt sometimes that I have Fibro/CFS. From the very beginning I have never felt that I have the muscle/joint pain that Fibro gives. I have more of a weakness to where I can't stand up, lift up my arms or move very well. All do to weakness, like there is an anchor keeping me in my place or pulling me down.

Exhaustion, just pure exhaustion. Frequently sleep for a day or two, but mostly stay in the bed due to exhaustion. I have been trying to exercise 4-5 days a week, walking mostly for about 20-30 minutes. But once I hit 20-25 minutes, my legs get weak, they start to shake and I am so dizzy(it feels like my brain is moving around in my head). Sometimes I have to call my husband to come and pick me up where I am standing, other times if I rest on the concrete for about 15 minutes I can make it home.

I have seizures occasionally and am getting ready to go to the hospital for a VEEG. I really am looking forward to this, because these seizures are getting worse and they are causing major bowel and bladder disruptions.

Does this still sound like Fibro to you all? I have been dx as "possible MS" and from the very beginning before I went to a Rheumy that is what I felt I have. My neuro sent me to the rheumy because he couldn't find anything that could conclude that I have MS(except for the MSHug).

Any advice would be great, also suggestions/ideas/comments.

Thanks in advance for all your help.

M

I'm certainly no doctor, but I think you're right..It doesn't sound like fibro to me. I'm glad your going in for more tests, especially considering seizures! As far as weakness/dizziness after walking a ways, I can relate to that. I can walk only so far, then it's stop,sit down and cool off or stop, fall and pass out. Hope you find the answers to this!

i'm sorry you're feeling so bad.
i have fibro and ms and it doesn't sound like fibro to me either.

has your neuro done any mri's?
what does your pcp think?

do you know what your neuro exam is? does it turn up anything abnormal?

you may need to get another opinion from someone else.
maybe your dr isn't looking at you objectively anymore.

and ps on the exercise. i think it's great that you're able to do so much.
but, if 20-25" makes it so you can't walk why don't you cut back to 10-15 and see how you feel.

please keep us posted.

So many people (TOO many, IMHO) are dx'd with fibro and then ms - maybe they have both or maybe the doc says fibro until he can prove it's been ms all along.

My neuros said they were sure it was ms (I have brain lesions) but since the other tests were normal, they couldn't dx it. He's saying fibro for now, wants me to see a rheumy to get help with that pain. And I Don't know if it's ms or other things I've been dx'd with, but I'm sure it's not fibro.

He has not ruled ms out, but we're waiting for new symptoms, reasons to test again.

But anyhoo, I get where you're coming from.

Do have a talk with your doc about this. Maybe he'll tell you why he thinks the way he does, or maybe he'll at least treat your symptoms better/more acurately, and do more tests.

You deserve to know for sure what's wrong with you, and if you have doubts keep seeking answers.

I had the CFS dx for about a year and a half, didn`t seem to fit real well, but not really enough differences to question it too much. The dx from my pcp and an infectious disease specialist.

It wasn`t until I started walking really bad that my pcp started thinking something else, and ordered a mri, further mris confirmed MS. Have you had MRIs?

Fatigue for me was non stop, and got progressively worse.

I dont know anything about fibro.
So I cant say forsure,but Heres a hug for u,
hugss,
aly

If this has been going on for many years, and if it is MS, then lesions are very likely to show in a MRI by now.

They are usually looking for one of two ways for MS to present itself:

1. a history of flare-ups (relapses) of new or worsening symptoms . . . followed by remission.

2. a progressive down-hill slide of accumulating symptoms. (NOTE: this categoy of MS is relatively rare, and most often found in men)

From what you've said, you've had basically the same symptoms that have not let up, but not too many new symptoms have occurred. This doesn't point to MS, by usual assessment techiques . . . even though the symptoms you have do sound very similar to what we experience.

It is definitely worth having a MRI at this point. It MAY be CFS/Fb, but I think it's time for a new evaluation.

Cherie

See this is why I'm confused also, I was DX with fibro almost 10 years ago. I have never had joint pain and any muscle pain seam to just come from over doing it. Just this past week my thigh muscles would hurt but than they would go numb. I do have nerve type pain (including electric shocks) a lot, my last Dr DX with with neuropathy but my new neuro tested me for that and said I did not have neuropathy but he didn't know why I would have nerve pain.

I have a lot of weakness. When I do try to do much I get weaker, shaky and dizzy. My arms and legs feel like weights and there very hard to left up. I have even checked my sugar level when this hits, it's always been fine.

I get very confused/lost feeling a lot and I feel like my body is shutting down. It's scary feeling sometimes.

I also "black out" some times. I will be walking and my ears will start ringing (I know to stop and grab on to a wall or something) and than my eye sight goes black, I can't tell if I'm still standing or not. I'm not able to hear well, I seam to be able to say "just a minute", right as it's starting. DH is very use to this now and he knows what it looks like when it starts and will grab my arm to make sure I don't fall. This whole thing only last about a minute maybe two, I've never been about to time it but DH has said it what only about a minute or so. I have checked my sugar level right after one of these and it's always good.
Can't say for sure how many times this happens but I can't remember a whole month going by with out having a less one of these and it's been going on at least 20 years, at 1st I only got a few a year. My mom didn't ever take me to a Dr over it because she said it was just low blood sugar, I thought she was right until I got older and was having them more often and it didn't feel like my blood sugar was low and I got a glucose meter to check it.
My last Dr didn't know what it was but sent me for an MRI (4 years ago), that came back clear.
My MRI from last month came back clear also.

This does NOT sound like Fibro or CFS. It smacks of symptoms consistant with MS.

I'm NOT a doctor or in the medical field but have spent five years researching and studying MS and all the comes with it.

I would recommend you review your current/past symptoms and their severity as to how they are impacting your lifestyle with your PCP first. Have him do the blood lab workup to rule out other diseases or conditions that mimic MS.

Then go to your neuro, or better yet find an MS specialist in your area, and have him evaluate you clinically and possibly order MRIs and an LP, if you haven't already done this in the last year.

It's all about gathering evidence and presenting your case. I think with your PCP's help you will have an advantage.

Please keep us informed.

You know I was just thinking, where you DX about 7-11 years ago. It seams there were a LOT of people DX that time, like it was the "latest thing" Dr.'s were Dxing than. I just think a lot of Dr.'s were quick to DX fibro than. All about the same time a friend I was working with with DX with fibro than I was than someone else I know and my aunt and so many others I didn't know, just in talking to others in stores they just got DX or there friend. Anyway all I'm saying is it seams odd that SO many were DX about the same time. Even talking to others online (even on firbo boards) I have only ran across a few that was DX outside that 1996-2000 time frame. Just seams odd to me.